About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Cyndi's AVM journey

Friday, July 25, 2014

Hi everyone! It's that time again - going to write all about our adventures after this last trip to CO! Celia was starting this trip with me, and as soon as we walked into the airport to the SouthWest counter, I get excited greetings from one of the ladies behind the ticket counter! Merrilee is so supportive, I asked if she would take a photo with me to put in my blog!

Also was recognized by security @ metal detector - the CC Airport employees have gotten used to seeing us so often!
We arrive in CO about 3:30 p.m. and head to the car rental place. Once we got the car, we headed to the hospital so I could get checked in! Since it was late in the afternoon, Admitting was closed and Dr. Yakes office was
too and his patient coordinator told us I would be a direct admit through ER. First we made a quick stop @ Safeway for some snacks before I get stuck in the hospital!

Celia took this photo w/her I-phone - the view from my room!
Soon as we put the luggage down, Celia stayed a bit, but I know she had lots to do as well, so I told her I'd be fine on my own. I was on the 7 North as usual and I'm familiar with the nurses and techs! Celia had dinner @ The Copper Pot, across the street from the hospital then went to check in @ the hotel.
I had plenty to keep me entertained - Celia surprised me with the Pope book and one of my co-workers had lent me a book called The Breath of God - turns out I had forgotten I own it and it's in my Nook!

I'm also re-reading the Diana Gabaldon series of books, as the first one called Outlander will be a series on STARZ next month! I'm about half finished with the second book in the series called Dragonfly in Amber.

So the original plan had been for me to get admitted Monday evening, then be taken to have an angiogram Tuesday to see if there was any trace of avm left. Lately I had been experiencing blood running down the back of my throat and I was afraid that would happen while I was under anesthesia. I was talking to Dr. Yakes, P.A., Kelly about it - and she said as long as the inner cuff was inflated, then I wouldn't have to worry about blood going down into my lungs. The plan was to see what the angiogram showed with the possibility that Dr. Yakes would do an embolization if there was a trace of avm left. I'm supposed to be "done" and this was for a routine check up after being in the completed stage. I hadn't had anything to eat/drink since Monday evening and I wasn't taken in for the angiogram until 4 p.m. Tuesday! Luckily Kelly told one of the nurses to go ahead and let me have some clear juices and jello until 10:00 am. so I would have some food in my system! I was now in OR and had just moved over to the bed where the procedure would begin and I could tell I had blood coming down the back of my throat. (Here is a good shot of Dr. Yakes right before he started my embolization)!

I sat up until it passed and next thing you know, I'm waking up in my room. I heard Dr.Yakes used 15 cc's of alcohol injected in to the left side of my face and even used some coils! I was struggling to breathe when I was waking up from anesthesia - like I couldn't completely draw a full breath, only shallow breathing. I kept praying that the feeling would go away, it was hard to talk - turns out because that balloon on the inside of my trache had not been deflated! I know I mentioned it to Kelly before going to surgery - but maybe they kept it inflated in case I had more bleeding so it wouldn't go into my lungs. In either case, I was also not able to get out of bed until 11:00 p.m. to make sure the groin stick from the angiogram was healed enough.

Meanwhile part B of the plan on this trip was that I would have the debulking surgery with Dr. Robinson the following morning, Wednesday. The nurse answered the phone when Dr. Robinson called and Celia was in the room with me as well - and I made it clear that there was no way I was having another surgery right after the one I just got out of! I was so uncomfortable and wondered why I wasn't getting Decadron (steroid) in my IV to reduce the swelling from the alcohol Dr. Yakes used! I asked 2 different nurses to check my chart and make sure they hadn't overlooked the order to give me that Decadron I needed! It was hard to swallow, much less try to talk! About 4:00 a.m. one of the respiratory techs came in and I asked her if the balloon inside my trache was still inflated. She said it was and I talked her into deflating it so I could start to breath better! After she left the room, I got up and got my own Prednisone (steroid) that I had with me - just had to get that swelling down inside my mouth!
Meanwhile I coughed a couple of times and started more bleeding - had about 3 of those episodes right after surgery! I would end up spitting out blood clots in the sink. Ugh! Can you imagine if I would have had that scheduled surgery and having all the bleeding right after the first surgery? Apparently these bleeds I was having after surgery were the result of the alcohol embolization that Dr. Yakes did. It was strange because I went in to have the bleeding down my throat stopped - yet I still bled about 4 times after the surgery. Guess that area needed time to heal - had a couple bleeding incidents once I got home, but they were less than what I had after the procedure while I was still in the hospital.
First thing Wednesday morning, Dr. Yakes and Dr. Robinson came into my room to find out how I was feeling and why I had changed my mind about the debulking surgery (on this trip). Dr. Yakes was telling me that I was already scheduled and people were expecting me in OR, etc. I could barely talk and was still struggling to breathe well, that I just couldn't see going under again so soon and possible wake up even more miserable with my head all wrapped in bandages and a tube on the side of my neck to remove fluids. Celia hadn't gotten to the room yet from her hotel, otherwise I could have gotten a great shot of both doctors! It's a huge production trying to put these appts. together - especially when it involved two very busy docs! I managed to ask Dr. Yakes why I wasn't getting any Decadron and he said there was an order in my chart! We later found out that there was two charts for me, the one under Dr. Yakes name and the one under Dr. Robinsons name! The latter chart didn't have an order for Decadron but the first chart did, but that's not the one they were looking at! Finally Mandi and Kelly came in my room and told me they had straightened out the problem and would begin giving me Decadron through the IV. Most of Wednesday I was still struggling to swallow and breathe - and Celia had agreed that it wasn't a good idea to have had that second surgery. She changed my flight to be able to leave with her on Thursday - otherwise my ticket back home wasn't until July 29, the following Tuesday! Mark was going to fly in on Saturday and then knew if I had the debulking surgery, to expect to be in the hospital until Sunday. Then take a couple days extra in CO in case I needed anything from the doctors.
To boot, my brother-in-law Jim and his wife Shelley would not be able to take our kiddos, since one of their furry kids was sick. So the week before this trip, I checked out a couple of places where we could board the kids! Went to the place on the island where Celia boards her pets, but they weren't open on Saturdays and that's the day Mark would have dropped them off! I had already checked out Barkaritaville Pet Resort, but took Mark a couple days later so he could get a tour.

The kids were up on their immunizations and luckily Mark found that paper work - it was done through the City Vet. We still ended up taking Hanz and Bella to our regular vet to get the kennel cough and flu shot and they needed a fecal exam! Oy vey!

Back to my adventures in the hospital .... my favorite tech, Alex came in my room! Celia told him, "glad you came in to see her, this is the first time she's smiled today"!

He's such a cutie - he plays along when the nurses and I tell him he reminds us of Taylor Lautner in the movie Twilight, so he'll sign in on the dry eraser board as "Taylor". Poor kid, shortly after he came in and gave me a hug, I started having a bleeding episode! He ended up helping on of the nurses put me in a new gown since I got blood all over the front of the one I wearing! Those things have so many snaps, the nurse and Alex were able to put a new hospital gown on me and let me keep a sense of modesty! Ha, ha!

You know after I got out of my first procedure Tuesday night - I never got to sleep. The following day (Wed.) Kelly found out I never got to sleep, so she ordered something to knock me out - Celia says I slept hard for about an hour - I know after that I didn't sleep @ all until we checked out of the hospital!

Dr. Robinson had asked if I was staying in town long enough where maybe I would change my mind and go ahead with the surgery with him. You know, if I had gone in for that angiogram early in the morning and only gotten say, 5 cc's of alcohol instead of 15 and no coils like Dr. Yakes used - if that darned ballon had been deflated and I had been getting the Decadron, I might have been able to have that second surgery that was planned - but I was so miserable - there was just no way I could see myself going under anesthesia again while I was struggling to catch my breath!

So, Celia was able to change my flight and cancel Marks, so he wasn't going to have to fly to CO and that meant we wouldn't have to board the kids! Yay!

Here's my Velcro baby Hanz, sleeping with dad since mommy was in CO! Here's a cute shot of Bella, she likes sleeping in her original baby bed while her head hangs off the end of it!

So now we were able to get home Thursday evening (5 days early for me)! I missed my babies so much! The nurses @ Swedish ask for Hanz and Bella because they know how much they mean to me! Most of them have pets too, so it's nice sharing our furry kids with each other!
Ok, I'm going to stop blogging right now - it's too quiet around here, but I have a feeling Mark is in bed and both dogs are with him! I'm sure I'll remember something else about the trip and add it later!
Until then, thank you all for your prayers, love and support! Got a lot of positive comments from my Facebook friends on my avm t-shirt! Ok, take care and hope all is well with all of you! I'm guessing I'll return to CO in a month or two to start that debulking surgery. We'll see.
Thanks for keeping in touch!
Cyndi
P.S. I just have to add that I wouldn't be able to handle this journey without all of you! I am surrounded with an incredible support system, between my family, friends and co-workers! Thank you for understanding that I'm just not functioning @ my best right now, but we're getting closer to being there! So much prayer, faith and love ease this journey for me a bit - because have no doubt, it's been a very rough road for such a long time!
My husband Mark especially is a saint! Well.... for the most part! :> ) Mark takes super care of me and knows exactly what to do to make me feel better! He works all day, then comes home to take care of me, make dinner and take care of our furry kids, Hanz and Bella! Guess I'd better finish this so I can get my things ready and head to work! Will keep you posted!

Just found this photo of Dr. Yakes on Facebook - that is so cool! We'll call him Yoda Yakes! Dr. Y has a wonderful bedside manner - makes everyone feel so special and well cared for!

Saturday, May 10, 2014

Hi Everyone! Wow, it's been a while since I've written! Mainly because I had taken a break from going to Denver! Our main concern of course was getting rid of the bleeds, and Dr. Robinson (DDS and Plastic Surgeon) did that by cauterizing the capillaries in my gums! It took a while for me to adjust to not having to worry anymore while I was eating a meal, or brushing my teeth or having a bleed in the middle of the night! So, after taking time emotionally, physically and mentally, I was ready to get back to CO!
About a week before my appt. time, I get an e-mail from one of Dr. Yakes P.A.'s - Mandi Shaw, that she was very excited that I would be there next week! I just can't emphasize enough how awesome everyone @ Swedish is! I had posted on Facebook that I would be there the following week, and immediately got a response from one of the nurses (Laurie) @ Swedish, also looking forward to seeing me! They make their patients feel so great and well taken care of!

Mandi

Laurie

Marks brother Jim and his wife Shelley would be taking care of our kiddos while we were gone a few days. For me that's the worst part of the trip, leaving Hanz and Bella! We took them to see the Easter Bunny this year! They're familiar with Santa Claus but this was their first time with the Easter bunny and they were not too happy!

Anyway, soon as we arrive @ the Southwest counter @ the airport, the clerk recognizes me, "Hey! Haven't seen you in a while"! I've been flying to CO for so long, I get recognized @ the airport! Flight took off and we landed @ Houston Hobby airport. Mark and I like to sit across the isle from each other, that way each of us gets an isle seat - Mark for stretching out his long legs and me for being claustrophobic. So we board the plane in Houston - the passengers were almost all on board and @ the last minute, a lady asked if she could sit in the seat next to me (middle seat) since the window seat was already taken. I said yes of course and didn't realize until she sat down, that a big part of her was spilling over to my seat! Yikes! I looked @ Mark and whispered, "I'm going to need a Xanex"! He was going to stand up and say something to one of the attendants, but I shook my head no. Well a few minutes later, the attendant that boarded us, called Mark and pulled him aside several feet away. He asked Mark if I was his wife, and would I mind moving to the empty seat that was between Mark and the gentleman already @ the window seat. I do not like the middle seat, but didn't have much of a choice since the rest of the seats were taken! Oy! After moving across the isle, the middle seat didn't seem so bad after all compared to where I had just been! Turns out the flight attendant told Mark he would give us a $100 voucher for the inconvenience. Once we landed and went to the Southwest counter, the attendant gave us an extra $100 voucher - cool! We can certainly use that on our next trip!
Took the shuttle to the car rental area and picked up a vehicle. Headed over to Ted's Montana Grill since it's near the airport where we have befriended one of the waiteresses there! Turns out Michelle used to live in Calallen! She is the sweetest person, the kind that would give you the shirt of her back! I keep in touch with her on Facebook but hadn't seen her in a while, so it was great visiting with her again!
I had a mushroom swiss bison burger with sour cream and avocado and Mark had a bison burger called The Kitchen Sink and it included ham an over easy egg and avocado and who knows what else!

Headed to the Safeway grocery store near Swedish to pick up some snacks before being admitted. Ran into another nurse that recognized us from my stays @ Swedish, so visited with her a bit! We finally got to Dr. Yakes office - I had brought Becky, the patient coordinator, one of my favorite things - a Circle E candle called Bird of Paradise! She is such a doll and helps me so much when I set up my appointments! Kelly and Mandi were both there and Andi (all Dr. Yakes P.A.'s) is the one that had me doing my admitting paperwork. We waited a while in their reception area, as we were told my room wasn't ready yet.

Finally we're told my room is ready and are lead to the 5th floor. WHAT? I always stay on 7 North - that's where all my peeps are! We were going to be put in a room waaaay on the old part of the hospital. Oh no! I immediately protested - nothing against any of the nurses on 5th floor, but I just couldn't imagine staying in that room! Mark was making himself comfortable right away, but I walked out of the room and around the corner, playing a game on my phone while I thought things through! All this time I didn't realize that the nurses on 7th had seen my name on the schedule and were saying that they knew me and I had to stay on their floor! One of my favorite nurses, Dave Labadie (part of what I call my dream team - the first group of nurses that ever took care of me @ Swedish) is now in an administrative position on 7 North and he must have gone to the Nursing Director, because next thing I know, she is introducing herself to me and saying that they will manage to put me on 7 North!

Dave Labadie

I hated to act like such a brat, but as long as I've been going to Swedish (11 years) I always stay on 7th floor and have become so familiar with everyone there!

I was happy to see Becky, another favorite nurse was on duty! She was happy to see me as well - she is a super sweet!

Had a new nurse on duty that I had never met named

Sariet! The other nurse with her hand on her waist is April and she says I have to get in line behind her to "adopt" Alex, my favorite Tech as a little brother! I brought him a t-shirt that says "Don't Mess With Texas"! Alex is a real sweetheart! He is very encouraging when I tell him about the surgeries I still need, by saying "baby steps".

Alex

Here is another nurse that came by and was excited to see us! It's so great being there, just knowing how well you're going to be taken care of!

So, finally settled in for the night - since we would only be staying a few days, Mark would stay with me in my room!

Anyway, of course I couldn't eat or drink after midnight since I would be having a couple of procedures in the morning. I kept asking when I would be taken for the MRI, so I could make sure the nurse could give me some valium since I'm so claustrophobic and hate being put in that tube! Laurie (the blonde nurse pictured above) was on duty in the MRI area, so it was nice seeing her! All this time I've been having problems with my allergies and have been trying for several weeks to get rid of my hacking! I had already had 2 shots and 2 rounds of z-pack antibiotics with my primary care physician here - but turns out, since I had a low grade fever, anesthesia decided it wasn't a good idea to put me under for the angiogram I had scheduled, with possible embolization if there was any trace of avm showing up. I got to see my favorite anesthesiologist, Qin, so that was cool! Back to my room and I just wanted to eat! Started snacking on the sugar cookies we had gotten @ Safeway and Mark went and got me a Venti Carmel Frappucino for the "trauma" of having the MRI! LOL! Yum!

I ended up getting some potassium through my IV, as well as iron and 2 units of blood!

I almost forgot to mention that on this trip we were able to meet one of Marks second cousins, Elizabeth, who volunteers @ Swedish! Now that we've had so many trips behind us and we know what to expect, we were able to relax and take time to enjoy visiting with Elizabeth! She is very knowledgeable about the medical field, as she works in a Hospice. She came by my room on her way home from work and stayed a bit, but wish we had more time to visit with her! Maybe next trip!

We also had a visit from an older lady from one of the nearby Catholic churches. She asked if we would like to receive communion so of course we said yes! We prayed and had a nice visit with her.

Later in the day, Andi came by and said that since I wouldn't be having the Angiogram after all, she really couldn't justify my staying another night in the hospital - in other words, the insurance wouldn't pay for it. Yikes! We immediately called the Marriot Suites that give us a hospital rate and luckily they had a room available! Packed up our stuff, stopped @ Wholefoods to pick up something for dinner (found the latest issue of a magazine I like)

and checked in to the hotel! Settled in to watch American Idol and relax before my appointment with Dr. Robinson the following day!

Meanwhile, my phone didn't seem to be working! I shut if off and on several times, but could tell something was wrong because I wasn't getting any notices on Facebook!

In the morning, I got up really early, took a shower and once Mark was ready, we headed down to the free breakfast the hotel offers! We had plenty of time before my appt., so Mark and I headed to Sprint to have them look @ my phone! Had to leave it there an hour, so we went to have lunch @ the Cheesecake Factory! Mark had the avocado egg rolls

and I decided to do something I normally don't and ordered a pina colada to go with the sweet tamale corn cakes with avocado that I usually order!

That restaurant is located @ the mall in the Lone Tree area, so we walked around a bit - we like going to see the puppies @ the petstore! Don't know what this is, but Mark took a picture of it!

It's finally time to go see Dr. Robinson for a consultation, so we had a nice visit with him! He was happy to see how my lip/chin area had healed that he worked on in Nov./Dec. He's thinking he wants to start debulking the area under my chin! He knows there are some coils in there that still need to be removed. This will be a tough one - it will be hard to know how long I'll need to be in the hospital after the debulking. There are several surgeries that need to be done, so this will all be done in stages!

Here's my Hanz - has to be near me while I'm blogging, so I put him on the stool next to me!

After Dr. Robinson's appt., we headed to pick my phone up @ Sprint. They had told us they would have to reset it, so it was a pain having to go after some of the programs I had already installed, as the only thing that transferred were my contacts and photos! Went on to return the rental car and head to the airport for what we thought would be our 4:50 p.m flight. We got there a couple of hours early - and next thing you know, Mark gets a notice on his phone that the flight has been delayed to something like 5:10 p.m. Not too bad we're thinking, we were just concerned about making our connecting flight in Houston taking us home to Corpus! There was a couple more delays and we didn't leave Denver until about 7 p.m.! Guess what that meant? Yup. Missed our connecting flight by 5 minutes! Had to get on a shuttle to take us to a hotel where we spent the night until the first flight available to get us home - 10 a.m.. the next day! Our flight should have originally gotten us home @ 11 p.m. and I had hoped to go in to work on Friday! Since it wasn't looking like that was happening, I called my PCP and had them make an appt. for me to see my ENT, hoping Dr. Zane could give me something else for my hacking! I was thinking about how much I wanted to see my furry kids and now I had to wait another night!
We finally board our plane in Houston the next day, and that had already been delayed once! Had to call my ENT to tell them I'd be an hour late! The one good thing that happened was that I met a really nice person on the flight! Her name is Leone Lewis and we had lots to talk about, because she also has pets! Just wish I hadn't been hacking the whole time, but I really enjoyed talking to her! I gave her one of my blog cards and she gave me her number so I could send her a cute dog cartoon I had!

I recently joined a group on Facebook called I love My Brussels Griffon and I love it! We all talk dog and post photos and comments on our Griffs! I just had to share a couple of photos with you! This one I thought was hilarious - the Griff gets on the Roomba vacuum and rides around on it!

Here is that same Griff with a Roomba hangover! Lol!

Here is another of my favorite Griff photos - her name is Chloe and she has her own Facebook page with her two maltese siblings - look up Harvey, Bonnie Bow and Chloe for some great photos!

Ok, I really have to go! Hanz has already been swiping @ my ankles to get off the computer! Mark went to some concert with his brother Jim, so I've already heard the kiddos hooowling for daddy @ least once!
Thanks so much again to everyone for all your love and support! Couldn't do this without you!
Love and Hugs!
Mark, Cyndi, Hanz and Bella!

Saturday, January 18, 2014

Here I am again! How are you? Happy New Year! Hoping everyone had a safe, happy holiday season! I've been wanting to blog for a while, but so hard finding time! If I'm not in a "writing mood" it won't turn out the way I want either, so .... I've asked Mark to try and entertain Hanz, as he's usually swiping @ my ankles to get my attention while I'm on the computer! During the week of course Mark and I both work and I miss Hanz and Bella all day long - when I get home, I can't wait to spend time with them! It's the reason I don't play games on Facebook (who has time?), because then I feel like I'm neglecting them! I'll sometimes be standing in front of the TV a few minutes, and I get the "rump bump" from Hanz! Stands on his hind legs and with his front paws he bumps my behind as if to say, "pay attention to me Mommy"! Love my furry kids! They enjoy being our shadows and follow us everywhere! Hanz is taking a nap so he can stay up late and watch The Golden Globe Awards with me this evening!

Ok, so had to go back to CO a couple weeks after my first reconstructive surgery with Dr. Robinson mid-November, because my lip came apart after he removed the sutures since the tissue in the area wasn't healthy.
Mark and I left Corpus Christi early and then ended up having an hour delay in Houston! Luckily, it didn't interfere with our connecting flight. But look who got on the plane in Houston - this nice lady had her furry kid with her - an Affin Pincher named Cooper! Such a cutie and very well behaved! That breed is like a cousin to the Brussels Griffon, like our kids! Bella would never sit still if we ever took her on a flight, she's be running up and down the isle and licking everyone! Hanz would be wagging his backside, just thrilled that there were so many people to have fun with! Yeah, like they would allow them out of the seat/carrier - funny!

Finally arrived in Denver and could not find the name of the car rental in the paperwork we had with us! Celia had made the arrangements and printed out the info, but none of us had noticed that we could not find the name of which rental place it was! So that took a while - I think Mark asked one of the people @ the airport that help lost passengers find their next flight - anyway, all that was making me late to get to my appt. @ Dr. Robinson's office, so we could go over a few things before surgery in the morning! The snow was still holding on - this photo is outside Dr. Robinsons office!

Soon as we were done @ Dr. R's, we headed to the hospital to get admitted!

There wasn't time to try and get everything arranged to have Dr. Robinson do the surgery @ Swedish as he did in November, so this would be our first time in a different hospital where Dr. Robinson normally practices called Sky Ridge Medical Center! It is a beautiful hospital and everyone is so gracious and makes the patient their top priority - like @ Swedish!

Since it was right before Christmas, there was poinsettias everywhere!

Since it was after regular hours, I was admitted through the ER, and while I was still in the middle of that process, I got a call from one of my besties that lives in Dallas! She was calling to wish me luck on my procedure which I thought was so thoughtful! Patty and I have known each other 40 years - I like to say we met when we were 1, but we were actually more like 12 and 13! Said she would call back once I got settled in the room so I could finish getting my paperwork done. Patty and I used to have sleepovers while we were still in middle school, and we used to stay up late talking in the dark, playing silly games like, "who would you rather marry, Donny Osmond or Andy Gibb"! For laughs we'd sometimes change it up by saying, "who would you rather marry, Tiny Tim or George Goble"! Some of y'all reading this won't know who those people are, but moving on ....

Got settled in my room, getting everything lined up as far as getting Respiratory to come in and set up the humidifier water/hose for my trache, had to get blood work to get a cross match in case I needed a transfusion during surgery - you know, all the fun stuff that goes with that scenario! The nurse had been in and out several times, super nice - good sense of humor... so @ one point I was sitting on the bed with my back to the door and I heard the door open, and someone said, "who would you rather marry - Justin Bieber or Russell Brand"? I remember thinking, WHY on earth would the nurse be asking me that?! I turned around and was so shocked to see my bestie Patty! OMG! I could not register it in my brain because we had already had such a long day in airports, Dr.'s offices, car rentals, etc. and in my mind I'm going, "Ok, Patty lives in Dallas (well, Frisco) and I know I'm in Denver! I think. I had no clue that Patty had called my sister Celia and Dr. Robinsons office to get all the info she needed to surprise me! She was in Denver for a work conference and thought she'd drop by to say hello! Isn't that awesome? I hadn't seen her for several years, but we always keep in touch, and I had no clue when she had written me an e-mail prior to my arrival asking for details about the hospital and all that she would be dropping by! It's things like this that make it a little easier to keep on going when there are times that I just feel I can't take any more trips, surgeries, bleeds or whatever goes with this avm nightmare! It was such an incredible feeling knowing Patty took time out and went out of her way to make me feel so special! She's such a doll - brought me a box of Godiva chocolates! Oh, and since Justin's a little young for me, I had to go with Russell Brand - ha, ha!

It was such a long day for both of us and Mark takes such great care of me - poor guy, exhausted! Could not handle any of this without Mark - he always knows what to do to make me feel better. Mark does all the cooking and takes such great care of Hanz and Bella! He feeds, bathes and grooms them - picks up after them and takes them out for walks! Sometimes I can go on the walks too when I feel well enough to keep up! All I have to do is love them, hug them and tell them how much I love them!

So, here are a few photos of me right before surgery!

With the anesthesiologist -

Surgical nurse - check out her cap! Dr. Seuss!

One of the things Mark liked about Sky Ridge Medical Center (SRMC) is that in the surgical waiting room - there is a screen with updates on how patients in surgery are doing! I forget what my number was, but you get the gist!

Here I am after surgery!

Here is a photo of the stitches once the dressing was removed! Dr. R. was happy to find some healthy tissue a bit lower down my chin!

Dr. Robinson wanted me on liquids and no talking for a couple of weeks @ least. Huh. He said it was just his precautionary advice. He was able to remove the stitches in my gums from the November surgery, so that was good!
Can't remember how many days I had to stay in the hospital - but I do know I had a pseudomonous infection (which isn't surprising since my lip had been all opened up), so got some IV antibiotics while still @ SRMC. I believe we had a couple days after being released before our flight home, so I came back to SRMC a couple of mornings to get more IV antibiotics! I had posted this next photo on FBook - had to laugh when I saw this Suggestion Box down the hall from my room - because Sheldon on The Big Bang Theory is always filling that suggestion box @ his place of work! I hadn't realized I was wearing my Sheldon t-shirt until after I saw the photo!

Day two of outpatient IV antibiotics. Of course we arranged for Walgreens Infusion to deliver more antibiotics to continue @ home! One of the nurses from Christus Spohn Home Health came by the house to get that started for me after our arrival. Luckily I only needed the antibiotic once a day and Mark is a wonderful nurse, so he took over doing that for the next few days!
Unfortunately, the meds made me nauseous, plus, having to be on liquids didn't make me feel any better! UGH!

After I was done getting my IV meds, Mark and I would go to Barnes and Noble for a little while. Or to get a few things @ Whole Foods - love that place! Check out the gingerbread house!

We made sure and spent a little time @ Swedish - ran into these ladies dressed as clowns doing volunteer work! We stopped and talked to them for a while and I gave them my blog card - asking them to check it out when they got a chance! It's wonderful knowing how many people take the time to help others and try to cheer them up by getting all dressed in their costumes and handing out cute stickers to the kids!

Then it was finally time to head home! Here's Mark @ the Denver airport!

Once we got through security and settled in @ the right gate for our flight, I made my way to the food court area to get a smoothie! The clerk that took my order was a doll - she totally let me have it for free! Thank you so much!

Couldn't wait to get home to our furry kids! Look @ Bella - she adores Mark and is so happy to be with her Daddy!

We just adore these two - Mark calls them monkeys!

I'm on an avm support group on Facebook and wrote a comment on there the other day and next thing you know, I get a reply from a fellow avm-er and guess what? She had recently started seeing Dr. Yakes and lives here in Corpus Christi, TX! She knew there was another patient in town, because Dr. Yakes has a world map in his office with pushpins showing where avm patients that come to see him are from - and there was a pin on CC, TX! So, made plans to meet up with Amber Brown - Mark and I wanted to give her the benefit of all our experience, even though our avm's are in different areas - there's so much to learn when you start treatments! Amber is super nice and we've since kept communicating! She also has furry kids, so she totally gets that about us! Amber shares our love of everyone @ Swedish and thinks Dr. Yakes staff is awesome too!

Oh! Can't forget that Mark celebrated his birthday New Year's Eve! His oldest brother Jim and his wife Shelley that live in Rockport, took him out to lunch at a Mexican restaurant! Mark had texted me the photo since I was at work - and I asked him if a shot of tequila came with the hat!

Mark had been wanting to see the latest Lord of the Ring series movie, so we ventured out to do that the day after his birthday! Here we are waiting for the time to be let into the theater!

I rarely go anywhere besides work, the grocery store a few blocks away and sometimes to Barnes and Noble to get free WiFi for my Nook for the free Friday book offered! Those outings are tolerable because I'm only there a short time. I just don't feel well enough to be out for a long movie and due to never getting a full nights rest and all the meds I'm on - I fell asleep several times during the movie - Mark had to nudge me awake! I realized that since 2008, the only movies I had ventured out to see were the 5 Twilight ones! I remember falling asleep while I was waiting on that last one to even begin! Took a steroid to keep me awake during the movie!

My co-workers are extremely supportive and I appreciate that so much! One of my probation officer friends down the hall from my area has a couple of Yorkies and she had company over the holidays (her cousin's girlfriend from Austin) that brought her Brussels named Romeo! She grooms him herself - cute!

I was asked by a co-worker the other day when I was going back to CO. Realistically - our goal was to at least stop the bleeds, which it seems that Dr. Robinson has done by cauterizing the capillaries in my gum area where the bleeds were coming from. I am still recovering from that Dec. surgery, and I need a break from the whole thing! I'm sure it's hard for anyone to imagine how difficult these trips are - especially now since we started surgeries with a new doctor. Reservations need to be made for flight, car rental, hotel; insurance to be verified - my secondary insurance never paid anything stating these surgeries were not medically necessary! I still have so many things that I need to have "fixed" in order to function normally and I just don't know if that will happen! If Dr. Robinson had a hard time finding healthy tissue working on lifting my lip - I can't imagine what will happen when he wants to start working under my chin area! There are still coils in there that need to be removed and several other issues that still need to be resolved! I am very blessed to have so much love, prayer and support - but it is emotionally, physically and mentally draining to go through this process! I just want to give up completely sometimes, no longer having the strength and will to endure any more! Not to mention, just tired of constantly not feeling well and having people stare at me like I'm a freak when I'm out in public! That does a lot to your self worth! I battle anxiety, depression, insomnia @ night - but at least it seems the bleeding is no longer a problem. That used to be a huge problem!

My primary care physician, Dr. Boynton, removed half the sutures approximately 3 weeks after my surgery, and then the rest of them a week after that! Want to make sure that area heals well, so Dr. B. prescribed some oral antibiotics to prevent an infection and some Tamiflu for me - hoping to avoid the flu Mark battled for almost a week! Dr. B. also prescribed some wound care for me to give that area where the stitches were the best chance of healing! I've been seeing this group of techs for a long time - they work out of Corpus Christi Medical Center, that is the hospital several blocks from our home! They were very impressed with the photos I showed them of how Dr. Robinson had lifted my lip and how much better I looked since the last time I had seen them for wound care! I was catching up on everything with the techs and sharing photos from our phones and I've been wanting to show you the group of people that have helped me so much! There was times I would drag myself in there first thing in the morning before work for my wound care appt. and not in the best mood because I was going through - but these folks are so caring and professional, I always left with a smile! This photo one of the techs shared with me was taken during Halloween! I've no football knowledge, but Kelly is #48 and the main one that usually does my wound care! I remember the tech on the lower right corner telling me she has a friend that years ago had her leg amputated to get rid of an avm. What can I say, I can't cut off my head! Facial avm's are extremely delicate and complicated - but I am so grateful for people in the medical field that help patients like me that need them so much!

Showed one of my football fanatic co-workers the photo and she was able to tell me what team each jersey represented! The closest I'll be getting to football is maybe tuning in to the Superbowl at half time because Bruno Mars will be on! It's award season and my superbowl is the Oscars! Already caught the People's Choice Awards, The Golden Globes and tonight - the Screen Actors Guild awards!

Loving American Idol this season, with another of my favorite people - Harry Connick, Jr. is now one of the judges - cool! I'd love to see him perform live one day, as well as Taylor Swift! I used to want to go see Randy Travis, but unfortunately I don't think that will ever happen with his health issues after suffering a stroke. Never got a chance to see Ray Price and now he's gone.

Here is a photo of a Brussels Griffon we saw at the Vet not long ago named Minky! There aren't many Brussels in Corpus Christi, so we love running into people that also have one! Minky looks like a cross between Hanz and Bella! I want to say this lady has two more Brussles at home that are male!

I keep in touch with another Brussels owner on FBook and she lives up north! She has several - and one day she said she opened the door to throw some bread out for the birds, and her Brus ran out into the snow going after that bread! Look at this adorable photo - those eyes!

Here's the other two she has! They're actually a little family - she has a male and female that had 2 puppies and she kept one and her mom has the other puppy that she brings over often! She has a couple of videos on U-tube of her kiddos - I post one on my Facebook page and the other is called "Brussels is a good boy" if you ever want to view it - cute! You can hear her accent when she pronounces the word chair (sounds like chayah). I went to college in Miami a few years and there were a lot of kids from the Tri-State area, Boston, Rhode Island - and I had forgotten how cool it is to hear accents - you don't hear that down here really. Ironically, as long as Mark has lived down here, (over 30 years) he sometimes gets asked where he's from - I don't hear his accent at all, but I really do when we speak to one of my sisters-in-law that still lives in OH!

We recently had some very cold temperature for South Texas and that does not make me happy! I'd much rather be hot (you can always strip and get a frozen Mark-a-rita) than be too cold and have to bundle up with several sweaters, jacket, gloves or whatever it takes to keep warm! Saw this when we were having that polar vortex and had to share!

You know I always like to add some humor to the blog - this was posted by a friend of Moms on her FB page!

Ok, I think I'll throw in a load of wash and then come back and try and figure out how to flip those photos so they show up the right way!

Much love to all of you! Thank you for all your love, prayer and support! I have no idea what my future holds as far as my health - I just want to take time to heal a while! I appreciate you keeping up with me!